MS and driving

The other day I was driving and realized my mind was not working right. I was thankful to be in our small town and almost home but it was scary nonetheless. I should not have been driving! Things that used to be 'no brainers' were now suddenly taking a lot of thought and were confusing to me. As far as I can remember, the other day was the first time my brain confusion impaired my ability to drive. Is this a sign of things to come or was it an isolated incident? Time will tell.

Usually if I cannot drive it's because I am too weak to continuously push the gas pedal. Cruise control is a blessing on road trips but city driving is physically exhausting for me and often times physically impossible. And then of course in this current "pseudo exacerbation" it was hard to drive at first because my right side was not working properly. It has since let up a little and driving is easier ... unless my brain is mixed up of course!

I probably have many years of driving ahead of me, but maybe I do not? Oh well, thankfully I have support and do not really like to drive anyway. You know, now that I think of it, the last few years have been hard on me. I thought I was getting confused in bigger cities because I moved to a small town. But now that I think about it, it's probably MS. I've lived in big cities my whole life and never had a problem navigating even the worst of situations. Now I probably make big city people mad because I drive slower because I have to think more.

Be merciful to the slow driver in front of you. You never know but maybe they are just doing the best they can?

"Secondary" MS Symptoms

According to the National MS Society, a 'secondary symptom' is: "the complications that can arise as a result of the primary symptoms." This recent "pseudo exacerbation" has given me the most 'secondary' symptoms to date.

A major primary symptom this time around has been the loss of normal function of my right side ... my face, my arm, my hand, my hip, my leg, my foot. Because my right side it not working correctly the rest of my body has had to make adjustments. As a result, my foot, leg, hip and back have been hurting. And then a few days ago my neck really started hurting.

I have not yet used a cane for walking but seriously was considering it this time around - and even more so once I discovered my whole body was messing up. Maybe if I had used a cane I would not have strained things so much? Maybe there is someone reading this that can give me the answer to that question? Thoughts? Ideas? Suggestions?

I am set to see my neurologist again this coming fall, Lord willing. I plan to talk to her about a physical therapist for times like this and also to teach me about using a cane (how, when, and what kind would suit me).

Exacerbation, flare, relapse: the real deal or just a "pseudo"?

It took  me several years to learn the difference between a real exacerbation (aka flare or relapse) and a "pseudo" exacerbation. In case you are in the dark, here you go [according the the National MS Society]:

Exacerbation
The appearance of new symptoms or the aggravation of old ones, lasting at least twenty-four hours (synonymous with attack, relapse, flare-up, or worsening); usually associated with inflammation and demyelination in the brain or spinal cord.

Pseudo-exacerbation
A temporary aggravation of disease symptoms, resulting from an elevation in body temperature or other stressor (e.g., an infection, severe fatigue, constipation), that disappears once the stressor is removed. A pseudo-exacerbation involves symptom flare-up rather than new disease activity or progression.

My thoughts: I believe stress and lack of sleep should be added to the "pseudo stressor" list. I guess lack of sleep could be lumped in with 'severe fatigue' however now that I have MS I see fatigue in a whole new way. There is a huge difference between 'lack of sleep' (aka tired or even extremely tired) and 'severe fatigue'. I can still function when I am tired or even extremely tired but I cannot function when I have what I would consider severe fatigue. I can hardly close my mouth to stop from drooling when I'm sitting on the couch trying to look alive.

Here are some good resources that better explain this topic. If you know of any others, please share.

This is a podcast where doctors discuss the differences between an exacerbation and a pseudo-exacerbation.

This is a PDF chart with guidance from one clinic about what to do when you think you're having an exacerbation.

MS Journal Entry 07-20-13

This is my first journal entry. I hope to make this a regular thing. Since this is the first, it might be a little different than ones to follow.

I have been struggling for the last few weeks with a flare / relapse / exacerbation, though the symptoms never really seem to go away; sometimes things seem a lot more manageable but it's always there in one way or another (or several ways). Something new this time is my right side is very weak. About a year ago my right side was totally numb from just below the ribs to the tip of my toes. And it was just the outer edge of the right side. For example: I could feel my inner thigh but but I could [literally] not feel my outer thigh. But this is not like that. I can feel it; it's just really weak. Some parts feel kind of numb, but not totally numb. Coordination is difficult. Little every day things I take for granted like peeling cucumbers with ease, pushing down the gas pedal, using the 10-key number pad with my right hand, etc. All of these tasks have now become a challenge. I have to slow down and really think.

Besides this new symptom, many of the old ones have come to say 'hello' and remind me they are still there. Burning in various areas of my body. Some confusion. Lack of concentration. Crazy fatigue. Crazy fatigue. Really. Weak. Speech problems. Blurry vision. And so on.

These things happen at others times too, but I just learned that's known as a 'pseudo flare / relapse / exacerbation'. I'll do another blog post on what that means.

How long will this last? It seems everything just kind of stops when this happens. Laundry gets behind. The house does not stay as clean. Projects get pushed aside. Meals become really simple and sometimes odd (oatmeal for supper ... it's easy, fast and still healthy, right?). Errands do not get taken care of. And so on. It's tempting to get frustrated some times, but I have learned to just take a deep breath and praise God for what does get done. As long as I do my best, what more can I do? Nothing but stress out and make things worse.

Speech and MS

MS has many faces. Some are ugly. Some are sad. Some are just plain funny. Today I will share a funny side.

No, we are not stupid. Sometimes we just have troubles talking. I used to be a very good speaker. Always aced the college speeches, was great at customer service on the phone, and so on. Now however I assume some people just think I'm stupid. Oh well. At least I can laugh.

Here is an example.

I was out shopping with someone and we needed something measured. Imagine me talking really slow and deliberately as I said: "We can take it to the fabric depart [pause for thinking...] depart [thinking...] depart [still thinking...] departner [no wait, that's not right. What should it be?] I mean, department, and have it weighed [ugh, more thinking] I mean measured."

Welcome to 'My MS Walk' blog.

I have been struggling with MS for many years, though I did not know it till about 3 years ago. At that time I knew nothing about MS. By sharing my day-to-day life with MS I hope to educate others who also know nothing about it. I will be real yet at the same time I will be keeping my identity private.

At this time I am not officially diagnosed though my neurologist says I have a very textbook case; she is just waiting for more scars to show up on the MRI and says it's just a matter of time. After a little more research, I am wondering if I have PPMS or SPMS instead of RRMS? If you have PPMS or SPMS please email me and share your experiences if you have time. I am still so ignorant to all of this.